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Alison T

Age at interview: 44
Age at diagnosis: 42
Brief Outline: At 32 weeks Alison T developed pneumonia and multiple blood clots (pulmonary embolisms). She stayed in hospital and took drugs to thin her blood. Alison was induced and quickly developed a condition called amniotic fluid embolism. She haemorrhaged and doctors had to perform a hysterectomy to save her life.
Background: Alison T is married with 5 children. She is a housewife, her husband is a sheet metal worker. White British.

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This pregnancy was Alison T’s 4th, and not planned. Her other children were aged 8 and in their teens. She is a petite woman and she was concerned during the pregnancy, as her previous babies had been large (over 10lb). With her previous pregnancy she had developed gestational diabetes. The early pregnancy went OK but things started going wrong when she developed a chest infection and multiple pulmonary embolisms (PEs) five weeks before her due date. She spent some time in hospital receiving a drug to thin her blood, called Fragmin (dalteparin). Because she was on this blood thinning drug, her doctors were very concerned that she did not have a caesarean operation, so they induced the baby at 37 weeks.
 
As her labour progressed, Alice began to feel very unwell. She developed amniotic fluid embolism, a very rare complication of pregnancy, in which amniotic fluid, fetal cells, hair, or other debris enters the mother's blood stream via the placental bed of the womb and triggers an allergic reaction. Her baby’s heart rate dropped and the doctors had to perform an emergency caesarean to deliver her. The baby was unwell and sent to the neo-natal ward where she stayed for 9 days suffering respiratory distress syndrome, jaundice and sepsis. While the caesarean was initially straight forward, within 30 minutes of the operation she had developed bleeding from virtually every part of her body, especially from the operation site. The doctors were ultimately forced to do a hysterectomy to try and stop the bleeding. Alison was extremely unwell and her husband was told to pray for a miracle. 
 
Alison was kept asleep for 4-5 days in intensive care (ITU) and was ultimately in ICU for 8 days and 2 days in a high dependency unit (HDU). The interview took place almost two years on from leaving hospital. She was still on drugs to thin her blood, and she remained concerned to about the vena cava filter (a filter inserted into her vascular system) which remains in situ – she has been told that it is not possible to remove it. Her daughter is now doing fine, but Alison has suffered panic attacks and post traumatic disorder (PTSD) since her discharge. Her trauma is mainly related to memories she has of her stay in ITU. She has received counseling from the hospital, which she has found very helpful. She has had good follow up from the hospital, seeing lung and heart specialists. 
 
The hysterectomy does not prey on her mind, other than some residual bleeding that she has as a result of the operation being incomplete. There is an operation that could solve this, but she does not feel ready to embark on the surgery at the moment. Her family were profoundly affected by her illness. While her 8 year old daughter seems to be OK, one of her teenage sons has since been referred to the local Child and Adolescent Mental Health Services (CAMHS) service for counseling and support.
 
This interview took place 22 months after Alison’s amniotic fluid embolism and hysterectomy. 
 
 

When she developed flu like symptoms it was discovered that Alison T had pneumonia. While she was...

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The pregnancy was quite traumatic from when we first found out, because we were older parents and didn’t even know if we wanted another child. She wasn’t expected. But decided to go ahead and we were both really pleased. I had had some complications with other pregnancies such as gestational diabetes, so was checked regularly for that. Had high blood pressure… and I think apart from that wasn’t too bad, wasn’t too… complicated.
 
And then it was, when I became ill, and then with a bad cold which turned into flu and then went to the doctors and was told it wasn’t on my chest, but it was just flu like symptoms. To go home and to rest but I felt so poorly that had, I went to bed. Which looking back and finding out from medical people was the wrong thing to do, because when you’re quite heavily pregnant you shouldn’t lay down for long periods of time. 
 
Went to the hospital a few days later for the gestational diabetes test, was too poorly to have that, and was discovered that I had PE’s, pulmonary embolisms and pneumonia. So, was taken to the labour ward into a room, because, just in case labour started, even though it was early, and also it was more specialist care in there, than just going to the to the ward.
 
So how many weeks pregnant were you when that happened?
 
Well that was the Christmas, so it was two months, probably about eight weeks before, so yes. 
 
And when you ill with the pneumonia…?
 
Yes.
 
Describe to me how you felt with that?
 
Don’t remember that much about it, just remember struggling to breathe, coughing constantly, wheezing, all the usual flu like symptoms. Ached everywhere, just felt really, really poorly and unwell, unable to do anything, just wanted to sleep really. And obviously worried about the health of the baby, because I had all sorts of pains from coughing and but didn’t realised it was PE’s as well.
 
So they took you to the labour ward?
 
Yes. 
 
And what happened once you got there?
 
I was monitored. I was on observations every fifteen minutes. Was given antibiotics, oxygen, a drip for fluids. Blood tests in my wrist, which is that’s where they determined, it was, it was, they were PE’s because they were multiple in both lungs. Had to drink lots because that helps to absorb the clots, and was on a nebuliser for quite a long time, and if not on a nebuliser then just on oxygen.
 
How did they describe to you what PE’s were? Did you, had you heard of them before you went in hospital?
 
I hadn’t heard of them. I wasn’t aware of what they were. The most upsetting thing was one of the consultants sat me on the end of the bed and said, did I know that PE’s were one of the biggest killers in pregnant women? And then that’s how I was told how I had them. So didn’t like his bedside manner.
 
My husband was more upset. I think I was so poorly I wasn’t taking everything in, but to hear it like that wasn’t, wasn’t nice.
 
 

Once she came out of intensive care, Alison T was put in her own room where she was constantly...

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And then from there down to the labour ward. That must have been quite a big transition?
 
I was glad to get out of the Intensive Care. It was, I found it very, very scary, because it’s so different to a normal ward. Very, very ill patients in there. And it’s quite upsetting. But one, I, one nice memory I’ve got, the morning, I think it was the Saturday morning I was taken out of there, it was one of the staff’s birthday and somebody came in with a tray of buns, and I remember having a bit of a grin on my face.
 
So in the labour ward, were you on a general ward? In with other women or were you by yourself?
 
I was my own, I was in a room on my own.
 
Okay, yes. And how was that care in comparison to the Intensive Care?
 
Oh very, very good. Very good. They were constantly monitoring me. Again I think it was fifteen minutes observations for days. Just constantly. I had two people taking me to the toilet. I had two members of staff showering me. My first shower. That was amazing. So you know, constantly. I even had staff come… because I knew them all very well by… because I’d already been in there at Christmas with the PE’s. I’d got quite a friendship with a lot of them and quite often they would just come and sit with me and we’d talk just chat. So you know, formed some very good bonds in there with the staff.
 
And what, how long were you in the labour ward for? How much longer did you have to stay in hospital?
 
Another week. I was in there another week.
 
Okay.
 
And then they were gradually bringing the baby to me. My husband was splitting his time, coming to see me and then going… he took over with the feeds and was feeding the baby, going back there. So he was constantly going backwards and forwards. And then when the baby was allowed to come and see me, sort of more and more often which was lovely, and then after a few days I was, he put me in a wheelchair and took me into where she was. And I was able to go in there.
 
 

Alison T would really like to be able to talk to someone else who had experienced amniotic fluid...

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And what about support? Where have you found support from?
 
All the people that I see at the hospital are all very supportive, but the one thing, there isn’t, for the condition that I’ve had, the amniotic fluid embolism, there is no support group, or I can’t find one that’s in this country. There’s one in America that I’ve joined, but I would really like to be in touch with people, somebody in this country, just for them… Because we would have an understanding, because when you’ve been through something like this, people don’t understand the enormity of it, and how it does affect you mentally really.  It’s a massive, massive thing, and you have all sorts of emotions when you know that most people don’t survive. You almost feel guilty because you have survived and then you’re questioning, well why did I survive? You know, instead of thinking oh thank God I survived, it’s almost the other way. Very, very strange feeling. So it would just be nice to talk to somebody else that had been through it. And how their families have dealt with it.
 
 

vAlison T was diagnosed with multiple PEs when she developed pneumonia and she was put on...

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The, apart from being told to drink plenty and antibiotics, but I think that was more for the pneumonia, there is no treatment other than I was on anticoagulant the Fragmin injections, because you can’t have warfarin when you’re pregnant, so it was the Fragmin injections twice a day. Which keeps your blood thin, and then the clots absorb themselves back into the body. That’s how I understand it.
 
Okay, so how long were you on the labour ward for that time?
 
For two weeks.
 
Okay.
 
And then transferred to a different ward when I was feeling better, and the pneumonia had gone and then sent home to recuperate.
 
Right. So you must have been about six weeks off your due date by the time you came home?
 
Yes, yes.
 
All right and how did you feel when you got home?
 
Exhausted, weak, emotional, [laughs] realising the seriousness of the PE’s. Didn’t like taking the Fragmin injections, they became painful. Had to go and have regular blood tests at the hospital to check INR and things like that, and to make sure my blood was right. So all very, very scary.
 
And who was doing those Fragmin injections?
 
Myself. They taught me, in hospital, how to do them myself. So twice a day morning and night.
 
And what happened? Did the pregnancy continue…?
 
I was monitored very, very closely because of the PE’s. I was at the hospital once if not twice a week and if not at the hospital, at the GP’s. My consultant was very keen to, to set up a delivery plan, because he wasn’t keen for me to go into labour naturally, in case I needed a Caesarean, because that, they didn’t want to do a Caesarean because of my blood being so thin, there was more complications. So they wanted me in hospital to monitor my blood and change from Fragmin to Heparin which is more easily reversible if you go into labour.
 
So I went into hospital then I think it was about five weeks before baby was due, because I had high blood pressure, and I’d been having some pains, so they decided to keep me in, just in case, because they want… they said they wanted to monitor it all the time, because they did want me to go into labour naturally, until I was on Heparin and then you know, they can monitor me.
 
Oh sorry. Going back to something I’ve just remembered. Before labour I was, I had to have a Cava filter fitted. It goes into your jugular and then down into your stomach and the idea of that is to catch any clots, and that was in preparation for, for labour, because my consultant was hoping I would have a normal delivery and not the Caesarean so the filter was just another added protection, if there were any further blood clots. So that wasn’t a very nice thing to have.
 
And it was only meant to be in for a month and they tried to remove it after a month, but the hook had bent on it, so it’s stuck there forever now.
 
So you’ve still got it there?
 

So I’m still on warfarin as well. Because the treatment for PE’s you’re on anti coags for six months and have to wear the stockings, but I still have to wear those every day. And I’m on warfarin every day for the rest of my life. Because the filter is still in there and they can’t take it out. 

 

Alison T had post-traumatic stress disorder and daily panic attacks for a long while after her...

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I had an MRI scan, but I had a major panic attack while I was in there. Which you don’t know you’re going to have until you’re in it. And also they wanted to put a drug into me which puts your heart under stress which panicked me even more. So the whole thing was a bit of a disaster and I couldn’t go through with it. And I tried twice. I was upset with myself because I’d got all the way there, felt I was wasting people’s time, tried a second time and couldn’t do it. Because unfortunately the one thing it has left me with are panic attacks. But that can be quite common with being in Intensive Care. And I have post-traumatic stress syndrome. Which I’ve had counselling for. So that’s an ongoing thing at the moment. 
 
They were very frequent to begin with. Daily I would say. Left me, to the point, I couldn’t even go to bed and lay down. I had a block where it came to laying down. So nights were awful. I had to fall asleep literally sitting up. And I became afraid of turning the television off. I got into a routine of, to get me upstairs to try and relax to watch TV and then try and lie down but I couldn’t do it. So it took quite a lot of counselling with that. They give you lots of little things to try and it did work in the end. But even now I still can’t turn the television off. I have to leave it on, just on standby and I don’t know what the connection is there. I don’t know. But and I can lay down, not completely, but I’m not sitting up. So, but, and I can’t, I used to go to bed quite early, but now I’m, because I was sitting up, I’m staying awake longer and longer. So it’s not completely gone yet.
 
Oh months. Months. And you don’t realise. As I say being in the MRI scan was one. My sister in law organised a theatre trip which included me, which I was really pleased about until I got on the train and had a massive one on the train as well. And then in the underground when we was up in London. And then another one in the theatre, so that was three in one night which was awful. But I just, I know when they’re coming on, so I’ve got things to put in place now, when I know one of them’s coming on.
 
 

Alison T lost several litres of blood and had a hysterectomy. Staff told her gradually what had...

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So going back to what happened while you were asleep. I mean how did you gradually discover what had gone on while you were …?
 
Not until I was back in the labour ward. I was, wasn’t told, for I think a few days that I’d had a hysterectomy. Not that that bothered me in the slightest. I wasn’t upset about that. It was explained that they had to do that to try and stop the bleeding. I lost nearly three litres of blood which an awful lot to lose. So that didn’t worry me at all. And I think it was just gradually I was told. 
 
I didn’t know how serious the baby, you know, how ill she’d been either. And I think I didn’t really know that until I came out of hospital. So, and it was my husband that was telling me bits and pieces when I was ready to hear it.
 
 

Alison T was offered counselling from the hospital after her amniotic fluid embolism and...

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So that the counselling service have been really, really helpful.
 
So tell me a little bit more about the counselling.
 
Yes.
 
When did you seek that or was that offered to you?
 
It was offered to me.
 
From the hospital or from your GP?
 
From the hospital. Which I think they do offer it to you if you’ve been in Intensive Care anyway. But, and you usually have to wait quite a while, but they got me seen quite quickly because of the history. And they started I think about six weeks afterwards. And I realised they were happening but didn’t understand why. And they were weekly sessions.
 
With an Intensive Care specialist do you think or …?
 
I just know it’s the counselling service for the hospital, so yes.
 
Okay and was that helpful?
 
Very, because they were able to tell me what to put in place when I could feel them coming on. And very helpful to know that what I was experiencing is quite normal for people that have been in my situation. Because you think you’re going mad, or you don’t understand why you’re feeling like you are. So yes, a very, very difficult time.
 
And how long did the counselling continue for?
 
It was only meant to be for six weeks, but I was offered it for ten, because I needed it. And I’ve had a top up session since as well. So I know if I feel myself getting worse I can phone up and they’re happy to see me. And just having that is a psychological help.
 
Just knowing that there is some help there?
 
Yes. Yes. Yes.
 
When did you have the follow up? What sort of distance?
 
I think it was a couple of months. I’d managed to go a couple of months without any …
 
Okay. So you haven’t had any counselling for a while now then?
 
No. Not for a while. I still do have the odd panic attack. But know how to deal with it.
 
What sort of things, what sort of things did they suggest you do?
 
It’s called CBT therapy. Which I found very helpful. And even things, just doing this with your fingers and with your toes can be helpful, because you’re focusing your mind on something else. I, for myself, I feel I need to just go for a little walk or something. I don’t like just sitting down, I have to be up, because it does frightened me. So you get the palpitations and sweats, and not very nice feeling.
 
And what is it about lying down do you think that’s…?
 
The counsellor just thinks it’s being in Intensive Care with all the tubes and going back to what I said earlier I could hear it, hear not everything, but I heard a lot. I was obviously a little bit conscious to be able to hear things. And its, it’s from then. It’s from when you hear that you can’t communicate. So that seems to be the stem of it.
 
And you mentioned PTSD, did they give you a diagnosis of that did they?
 
Yes, yes, they did. Yes.
 
And do you feel you have that still or do you feel that that’s…
 
In some situations. We’ve been to theatre since and it seems to be with crowds or I think it seems to be, the lady who was my counsellor summed it up compl
 

Alison T feels that her illness had a huge impact on her children. Although they were 'amazing',...

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And how was that for your family. I mean when they first saw you like that?
 
The children were amazing. My brother brought them up to the hospital for the first time to see me. I think they’d seen the baby, and said, “Your Mum’s your Mum, but she doesn’t look like your Mum at the moment.” I was very puffed up as well with all the drugs. And he said, “You know, she is your Mum. But she doesn’t look like your Mum at the moment.” And not one of them said anything to me. And how my next youngest who was eight at the time, how she didn’t say anything I don’t know, but they all gave me cuddles and never said a word. So… full credit to them [laughs].
 
The whole thing? Huge, huge impact. It was very, very scary for the children. My 19 year old daughter said when I had the baby; they knew something was wrong, because they weren’t told the seriousness of it at all. They had a grandparent and an aunty staying here, looking after them. Weren’t told how serious it was, but obviously they’re old enough to know it must have been serious, because they couldn’t understand why they weren’t taken up the hospital to see us. And see their new baby sister. I think also they were picking up bits and pieces with phone calls. So they knew that it was serious, but not how serious. My mother in law and aunt done their best obviously to try and keep things normal, but they were dealing with their own feelings and upset, because I wasn’t expected to pull through and at one stage, I believe the baby wasn’t expected to pull through either. So it was sort of double. And hardest of all for my poor husband.
 
And do you think this whole experience has affected them, does it still affects them now? Or has it affected them…?
 
I think it affected all of them but in different ways. One of my sons doesn’t mention it at all. My other son, [son], is under the CAMS team which is the mental health team. He broke down at school and it seemed to be this all stemmed from it.
 
How old was he when that happened?
 
He’s 16 now, so he was coming up for 15 when it happened yes.
 
And what about your other daughter?
 
I think it had a big impact on the 19 year old. I suppose her being that much older. Her and I are very close as well and she came to a lot of hospital appointments with me, and, and she was with me once when I went up, and they ended up keeping me in, and you know, she was there a lot of the time when these things happened, because she used to come to a lot of appointments with me. So she was very much involved. So yes, very upsetting for her. Well for all of them.
 
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